Dementia's stigma challenged

Some people can thrive with dementia but the disease is often shrouded in misconceptions, which the Alzheimer Society seeks to dispel in a new campaign.

People living with dementia are among the most stigmatized groups in society because of assumptions about losing dignity and the ability to express yourself, said Pia Kontos, a senior scientist at the Toronto Rehabilitation Institute.

"People with dementia face discrimination and social rejection. Often they are ignored. People will address their care partner even when the person with dementia is standing right there. They may lose friends because of misconceptions about abilities," said Kontos.

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Dementia affects everyone differently, Kontos said.

Phyllis Fehr of Hamilton, Ont., said she was floored by her diagnosis six years ago.

"Things go through your head," Fehr recalled. "You kind of go, 'Oh, what is my life going to be like? What do I have left with my life?' and I would be the first person to admit, you kind of get a little depressed."

Fehr has a family history of dementia and a nursing background. It took her at least two years before she changed her attitude. 

That's when Fehr then took up archery.

"I figured the more that I can do, the more I concentrate, the better things are going to be. This is something that I can do and do well."

Fehr hopes the sport will help her to keep up her hand/eye coordination.

She also takes medications and realizes there will be decline and more adjustments. 

The ability to express yourself through music, art, sport and various other ways is not uncommon among those with dementia, Kontos said.

Despite the struggles, dementia patients can live rich lives. But changing perceptions about the illness will take a societal shift to support people living with dementia.

"It's disempowering this stigma," Kontos said. "It's demeaning and when they internalize that stigma, they edit themselves into silence for fear of being judged, so they themselves are disengaging and that has really detrimental consequences for quality of life and for their well-being."

The Alzheimer Society launches its #StillHere campaign on Tuesday to mark Alzheimer Awareness Month.